Meet Gavin and Garrett
"The Jones boys (Garrett, 16 and Gavin, 12) were diagnosed with Classic duplication Pelizaeus-Merzbacher Disease (PMD) in 2001. Garrett was 3 and Gavin was not born yet. My husband and I made the decision to have Gavin because of the rarity of PMD, and they would at least have each other as brothers and partners. We were warned not to expect Gavin to be as high functioning as Garrett even though they both had 80% of their cells affected by the duplication of the PLP gene (Proteolipid protein 1 - a protein associated with pelizaeus-merzbacher disease).
The neurologist was right. Gavin’s first 5 years of his life were extremely medically challenging. Because his trachea was collapsing, he had to have a tracheotomy before he turned one year old. Because of tracheomalacia ( collapsing of the trachea). Six months later I had to save his life using CPR because his tracheostomy tube came out. At 3, due to severe gastric reflux causing failure-to-thrive, a gastric tube was necessary. Our little fighter started to get stronger, having fewer and fewer hospital stays, as he continued his therapies. Shortly after Garrett received his second power wheelchair, Gavin got a chance to try one. It was as if we gave him a new lease on life. He had the freedom to go anywhere that he wished!
Gavin does not talk, but that does not stop him from singing karaoke with his big brother who has slurred speech. He loves to read audio books. In school, he is learning to use an augmented communication device. Gavin enjoys many adaptive sports: T-ball, bowling, bocce, sailing, hand cycling, rock climbing and sled hockey. Believe it or not, Gavin loves swimming. But his most favorite thing to do is driving his wheelchair around the city with his brother or off-roading when we go camping.
Garrett has always been a wonderful big brother. From the day Gavin came home on Christmas, 2001, Garrett wanted to hold and feed him. And of course, I let him. They are very close still. Garrett has had his share of medical issues of late. Starting with hip surgery for a dislocation, then a tonsillectomy and adenoidectomy due to obstructive sleep apnea. He also has mild central sleep apnea. Most recent, he was in the height of his growth spurt, and developed severe scoliosis. This required spinal surgery and a recovery period with a torso brace lasting through the beginning of high school. Garrett championed through a severe mental break down; completing his freshman year on the honor roll and with a girlfriend. This year as a sophomore he is challenging himself by trying out for the golf team. His school has never had a student with disabilities join the team, until Garrett. He continues to enjoy adaptive sports like, swimming, hand cycling, sailing, fishing, rock climbing and playing power soccer.
The Jones boys are never afraid to seek out new adventures and meet new people. Garrett and Gavin live a life filled with love, compassion, fun and adventure. My husband and I enjoy and cherish every day with them. Our sons: The light of our lives."
Elmhurst Bicycle Club
Watch the video to learn Gavin and Garrett's story